On Friday, Katy and I jumped ahead of our regularly scheduled appointment at Shriner’s Hospital here in St. Louis by a few months. Shel was getting concerned that we had stopped using Katy’s AFO (ankle-foot orthoses) braces and wanted to make sure we weren’t going to be hurting our little girl long-term.
A little background: We’d stopped using the AFO’s (ankle-foot orthoses) for the last couple of months for a couple of reasons. First, the foot and ankle problem that I’ve mentioned here in the past had continued to happen whether or not she had her foot in the brace or not. In fact, it seemed to be getting worse when we were trying to get her in the brace. So, I began to work with Katy up to 10 times a day doing stretching exercises with her ankle and her foot. She calls them her “ech-ses” which is about as much of “exercises” as she can get her mouth around. I tried them out of desperation almost after the botox episode at her neurologist. Imagine my shock – and there is no other word for it – when they seemed to have worked. From the day we started on these drills, we have not had one day of problems since then with her foot. Oh, she’ll turn it in still, but now all you have to do is tell her “Straighten your ankle out, Katy” and she’ll do it.
(You might wonder why I’ve never said anything about this development in this blog before. Well, I’m terrified of jinxing it. I’m only doing it now because it has everything to do with my visit to Shriner’s. If this post suddenly disappears from this site later on, you’ll know we’ve had a return visit from the problem.)
The second reason we’d stopped making her wear her AFOs is because we wanted to know just what difference they were making in her therapy. Well, we really don’t have a concrete answer on that, either. The only true recommendation we got on this was to try a hinged AFO instead of the solid piece brace she had used in the past. With the twisted foot out of the way, this might be a chance to develop some more strength.
And, quite honestly, there’s a third reason here: I’m not sure who to trust anymore when it comes to my daughter’s progress. Shel and I are already well aware that we know more about Katy’s condition than her doctors. It’s just such an ingrained issue to trust what your doctor says, and I don’t believe in the slightest that any of her doctors are trying to harm her. I just get the feeling more and more that Katy is a triangle that doctors are trying to pound into the square hole of what an average kid responds to for each specific issue we face.
We get to Shriner’s at 7:50 am and immediately head to radiology to get x-rays done on Katy’s hips. (Katy’s original issues with hip dysplasia are still the main reason we were accepted into the Shriner’s family.) Those done, we head back to the outpatient clinic and hang out in our room for awhile. Katy loves the mirrors in Shriner’s rooms. Memo to all doctors’ offices. Put full length mirrors in all your rooms. Kids (okay, Katy) loves them and it’s the only hospital she doesn’t freak out in.
For the next two hours, we’re visited by a nurse practitioner, and two therapists. At this point, we still haven’t seen her actual orthopedist, and this has been a recurring theme. We haven’t seen an actual doctor here the last three times we’ve been to Shriner’s.
We then get sent back to radiology to do another set of x-rays on her back. Katy has had scoliosis since she was very young. Along with her therapies to strengthen the rest of her body, we also began to take Katy to see a chiropractor over three years ago to see if anything might help. Evidently something worked, the diagnosis of scoliosis no longer applies to my daughter! Score one for the home team!
Anyway, we get back into the room and about 15 minutes later – lo and behold – we actually get a visit from her orthopedist, as well! And here’s the part where things just started to go wrong for me.
Katy’s orthopedist just didn’t seem interested.
She talked to the therapists and the nurse practitioner for a couple of seconds. Manipulated Katy’s feet for a couple of second. Told them – not me – that a hinged AFO would probably be okay if they wanted to try it. And then looked like she wanted to leave. I tried to get something more out of her, explaining the issues we’ve been facing with her foot turning in and what her therapists have said. You know what? I don’t know if she cared.
Look. I don’t expect answers any more. This has gone on for too long with us. I truly don’t expect anyone to miraculously say to us: “Your daughter’s problems with her deletion manifest themselves this way because of this X problem. And all we have to do is Y to fix it.” It ain’t happening.
But is it too much to hope for someone to care?
Is it too much to hope that one doctor will come upon Katy’s case and say “This is fascinating. Let’s take a closer look at this and see what we can come up with”?
God, I hope that’s not too much to ask for.
But it also reinforces the one mantra that keeps coming back to us again and again: I am my daughter’s advocate. My wife is my daughter’s advocate. It’s up to us to make things happen for her.
It’s always going to be up to us.